V has had very disturbed nights for the last two or more years often up as many as 15 times a night or at least calling for help for one thing or another . A little while back she was put on Zopiclone . With this she either went to sleep for about three hours then was awake or equally she would stay awake till about 2am then sleep for maybe three hours . And sometimes it wouldn't work at all . She was then recently put on Temazepam . One tablet produced much the same results as Zopiclone but with more confusion in the morning - when the dose was doubled she still would wake at about 2am and want the commode but handling her was almost impossible even using the hoist as I couldn't get her upright enough to put on the belt and getting her moving in the morning was again very difficult .Now she has been put on Clonazapan (this week ) The first night I gave her a tablet 15 minutes before bed and she was virtually asleep before I could get her into bed and slept through till 3am - called a couple of times but then back to sleep until 7am . The next night she stayed awake until 12 am and then slept through . Third night she slept from 11pm until 6am and last night she stayed wake ALL night calling constantly - I think we had about one hour sleep between us Has anyone out there had similar patterns and any remedies that have proved successful .

18 Replies

Oh Georgepa, that was my Colin until about a year ago. He is still awake a lot but can't call out or tell me when he needs the commode. Night carers was the only solution but that doesn't help if you have to finance it yourself. I still have very little sleep on Saturday night when I'm on my own but that's nothing to what you are going through. I usually spend Sunday afternoon napping when C does. Invariably I'm woken by visitors or phone calls so feel dreadful on Mondays. I've caught up by Wednesday.

Was Colin prescribed any sleeping tablets with any success . I do pay for night carers three times a week , financially crippling but essential . Just means i can't have too much day care just 6 hours a week . I also do get Marie Curie at least once a week sometimes more which is a huge bonus . Its just sods law which is the bad or very bad night and last night I drew the short straw - the night before V slept for a good long stretch for her and yes that night I had a night carer !

He was but rarely slept longer than 90 minutes before waking up again. They knocked him out within 30 minutes of taking them but very soon woke up again. He had Tamazipam and a couple of others but I can't remember what they were. None worked for long. C also started sleeping better when I had night staff and I asked him why he didn't sleep when I was on duty. His response was, " Because I want to see YOU!" I suppose I should be pleased.

Oh George, what can I say? It sounds absolutely horrible for you. I must admit I am the same. I don't sleep, try different things, lots of things work once, but never two nights in a row! The only I can suggest is, you start taking pills, the nights you get help. At least that way, you do get some decent sleep and make sure your day care is the morning after you are "on duty," so you can go back to bed.

Klonopin is a controlled substance and will need higher doses w continued use. Behavior disorders is a side effect....sleep disorders would fall into that realm.

I;m sorry I think this is all I know. It does cause regular people to consider suicide...I doubt that would be a problem more a greater need for drug and behavior problems ie sleeping......crap I;m sorry

Bruce uses Ambien, also a controlled substance...and He too has fits of wakefulness lately...but sleeps till 10:30 am....If I can wait that long in the mean time, (we) go sleep walking!

Hi George it is horrible and the cumulative sleep deprivation will affect your health.

About 18 month ago M was prescribed Lorazapam 1 mg at half a tablet a night, with paracetamol 20 mg at bed time initially worked for about 4 hrs then a 10 mg dose of oramorph for a further 2 hrs but these did tend to be disturbed as morphine does not agree with M. This regime worked for a month then M would be awake calling, coughing or kicking off bed clothes. Palliative care team came and with GP increased dose of Lorazapam to full tablet at 2100 when in bed (not before as sleep follows quickly). Then if wakes again a further half tablet. This regime worked for about half the week which meant I got some sleep, but not enough.

Since Jan even this was losing effect, counter-intuitively DN said try stopping regime a couple of nights a week, yes the non medication nights were disturbed but the drug regained some of its effectiveness. Now in nursing home they say they use Tamazapam rather than Lorazapam and she is not too disturbed but that does not effect me. My sleep pattern is getting back to normality but still get waves a tiredness during the day even though M has been in the home for nearly 20 days.

Try asking your palliative care team usually attached to GP (may not be in Devon but is up here in woolly N Wales) or your local Hospice for advice on what they use for patients with disturbed nights. They have more powerful sedatives but have to be careful as some suppress breathing which can cause issues for PSP sufferers.

Thanks Tim - all useful information and gratefully received . Our GP has suggested that he might ask the Exeter Hospice to take V in to see if they can regulise her sleep patterns a bit if his prescriptions fail . Last night was a good one but basically because she had been awake all night the night before and last night I had a carer in of course so she had a quiet night too !

Oh George, can totally sympathise! You must both be exhausted. Mum wakes repeatedly through the night and it varies greatly for one reason or another. She used to take amitryptiline which helped with neuro pain and sleep a bit but stopped that and I suggested zolpidem. I'd read that it had been used in PSP clinical trials. GP only gave a week prescription though but that helped a bit. Then mum was getting very low moods etc so started Mirtazapine, which has helped a bit with sleep and mood. To try and get best night sleep I catheterise mum before bed, put a sleep enhancing music cd on, perfect temp in room, bought Egyptian cotton sheets and hope for the best !! She still wakes up a lot but these things help a bit. She also he issues with saliva/cattarh so she gets coated in Vicks vapo rub and sometimes take drowsy cattarh medicine to help sleep. Also as a last ditch I give her a lorazepam ! Prescribed for severe choking fits and anxiety but aids sleep too. It's horrible having to use drugs but only thing that really helps!

Luckily I know have night cover all week which is irreplaceable. I still wake up as I hear mums alarm go off but least I get bit more rest. I'm still shattered constantly though so don't know how all you other guys cope ! 18mths was my limit to doing nights.

Is v in any pain? That might be affecting sleep too?! But go back to doc or neuro or anyone who can help and stress the problems too !!! Good luck George ! Sleep really is so vital isn't it X

V takes mirtazapine too for depression and anxiety . She also has an arthritic knee which was about to be operated on before she was diagnosed with PSP but they won't do it now . This frequently wakes her in the night or so she says because often it seems more linked to the mind than the actual knee - very difficult to tell .She is on Naproxene paracetamol and 60 mg of codeine which is supposed to counteract that .Sometimes it does and sometimes it doesn't .